Tag Archives: moms

Chasing Rainbows and Running from Bombs

16 Apr

I’ve been thinking about writing this post since I heard about Gavin’s (Chasing Rainbows)death. He was 5 1/2 years old. He was a special needs child with special gifts and special parents and a special brother. If you haven’t read his mom’s blog yet or visited her facebook page, please do. You will be changed forever.

I’m sure I’m like most parents of special needs kids when hearing that one of our family has passed. I think, “What if that was my Oli? What if it was me taking pictures of my sweet girl as they wheeled her down the hall for the last time? What it was me giving her a bath and a kiss for the very last time?”

And then I sob and I cry and my heart breaks for this mother all over again.

I like to think of them as family because we are all in this together. Gathering inspiration and support, raising awareness about differences and forging our way trying to make an impact and an impression on the world that our kids are just like everyone’s else’s kids. Just a little bit different in more obvious ways.

I think that Gavin and his parents did that in his few short years on this Earth. He did the impossible. He made a difference. And he did it with his life and his death. His mother and father also achieved a rarely attained goal. They have changed the world.. They have changed the world by sharing their story with us. Sharing their heart ache and their pain. Sharing their courage and strength with honest words and tear stained faces. They have taken an unimaginable, horribly sad event and maintained dignity and grace while the earth shakes beneath their feet. They have made selfless choices and decided that despite their grief and darkness they have chosen to give another family light. They tried to donate Gavin’s organs.

This was not to be however.

Part of his liver was unusable so it rendered the entire organ unusable. His corneas were not able to be transplanted either. Rather than be shattered by this one positive that his family was clinging to, his mother maintained her poise and managed to never lose sight of what life is really all about.

Living life on life’s terms.

She talks about giving gifts and expecting nothing in return. Because that’s what a gift really is. And if it doesn’t work out? Then it doesn’t work out. They tried. I will stop there because I REALLY encourage you to visit her blog and read her story. Like I said…it will change you.

So I’ve been thinking about this family. Gavin, his mother Kate, his dad Ed and his brother Brian. This family that I have never met, never spoken to, never “met” on facebook or on her blog. I know nothing about them other than what I have read and what others have posted about them. I don’t know them and yet I’ve been praying for this little boy whose pictures I can’t stop looking at and whose sweet little face that I can’t seem to get out of my head. And then I ask the obvious question.

Why?

Why do these things happen? Why did such a small, defenseless, amazing little boy have to lose his battle so early on. Why? He has touched so many people. He has given so many people strength and courage and taught others to continue on in the face of difficult situations, in spite of labels and disabilities and the unknown. He just continued on. He lived and he loved just like so many other little 5 year old boys. Except that he wasn’t. He was Gavin. And for some reason people were drawn to this little guy and his story. They were drawn to the way that he lived his life.

Just like people are drawn to my Oli.

I don’t know why these things happen. I don’t know why people are drawn to these little people who never even utter a word. I think it’s because of what I stated above. It’s because of the way that they live their lives. Just like my Oli, Gavin showed courage in fearful situations and strength where others would be weak. He celebrated accomplishments with the ferocity of an Olympic athlete. Because life is not always easy for our kids, but they carry on. The carry on despite slow progress and others telling them what they can and cannot do. They carry on and thrive and progress and amaze people every day. They reward us and surprise us every single day. They make possible the impossible.

And I don’t know why Gavin had to die. But I do know that although he is gone, he will NEVER be forgotten. I know that people all over the world are fulfilling his mothers wish for random acts of kindness in Gavin’s name. I know that he had a purpose and his purpose is to continue to be an inspiration. Continue to be that light in the darkness.

Little Gavin lost his life yesterday and then the bombings at the Boston Marathon happened. Another little boy died. A little boy who also has a name. His name was Richard and he was only 8 years old. I thought, “I wonder if this family has seen this? I wonder if they know that another little boy died today?” And I can’t make sense of that either? I can’t make sense of the fact that Gavin got sick and died, but Richard wasn’t sick at all. He didn’t get an infection or have cancer. He didn’t get into a car accident or anything else. His life was taken. Taken, on purpose, by another human being.

How do you go on after that? I cannot imagine either one happening, but the rage and the anger that I would feel if someone else stole my child from me…would never be forgotten. How do you see the positive in that? How do you get to the light?

I don’t know. I’m sure that Richard’s family knows though. I’m sure that he touched the world in his own way. I hope that we learn more about this little guy in the days to come. Because I need to know that a life was not lost without purpose. I need to know that this child will be remembered and that people will not forget what we lost yesterday.

I don’t know who would do such a thing. I’m not even going to venture a guess. It has happened and they will catch who is responsible for it. That…I am sure of. Rather that feed more hate with hate, can we remember the people who lost their lives yesterday? Richard in Boston and little Gavin. Can we keep them in our hearts and heal without spewing more violence?

I’m not saying not to be angry. Of course not. But, can we remember what really matters? Can we remember the kids and the friends, and the moms and dads, aunts and uncles, brothers and sisters, who will never see their loved one again. Can we honor their memory and be kind to one another? Can we stop the hatred and stop reacting with fear? Maybe just for a day. Do something nice for someone else. Do something in Gavin’s name. Do something with love rather than hate. How many times are we angry with someone and cannot WAIT to give them a piece of our mind? How many times do we take that same fire in our hearts and tell someone else that we love them, or appreciate them? How many times do we close our mouths to keep the vicious words from pouring forth? How many times do we open our hears and allow others to see our vulnerability. How many times do people see our love?

Never did words ring truer to me “Be the change that you want to see in the world.”

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Mombot Commands

9 Apr

I feel like I’m some kind of mombot running around performing preprogrammed tasks on autopilot and spewing out prerecorded commands to my husband and children. These mombot sentences can be heard several times throughout an average day in my house. I say them so often that they come out in a monotoned, digitalized voice that echo one after another.

Sometimes my recordings have a skip in them and I don’t even realized that I’ve repeated the same sentence 3 times in a row.

” Stop. Picking. Your. Nose. Stop. Picking. Your. Nose. St-st-st-o-o-o-p…P-P-P-Picking. Your. Nose…What’s. That. Smell. What’s. That. Smell. Wh-Wh-What’s. That. Smell…”

And I wonder why my children tune me out?

Here are the top 20 commands and questions that are programmed to loop throughout my day.

1. What’s that smell?
2. Stop picking your nose.
3. Go potty.
4. Eat your dinner.
5. Stop whining.
6. Stop fighting.
7. Stop yelling.
8. What’s that smell? 🙂
9. Is that poop?
10. Is that a booger?
11. Why are you crying?
12. Don’t put that in your mouth.
13. Don’t put that up your nose.
14. Go to bed.
15. Stay in your bed.
16. Go back to bed.
17. No, we can’t buy that.
18. Put your toys away.
19. I love you.
20. Did you fart?

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This card pisses me off!

3 Apr
This little boy is in a wheelchair, but the bottom part of the picture got cut off.

This little boy is in a wheelchair, but the bottom part of the picture got cut off.

This post has been brewing for a while. I had to write a little something about this card, or cartoon, or blasphemy, whatever you want to call it. Let me just tell you, this picture PISSES ME OFF!

Aaahhhh! (Imagine me yelling at my computer screen) <—This is my frustration with this gem every time I see it float past my news feed on Facebook. And I have seen several versions of this one. I can't take it anymore! I can't keep my mouth closed any longer or I will start banging my head against the computer screen, rendering myself completely incapable of complaining about random things that are annoying me.

Really?

Your ONLY special need is to be loved?

Ummmm… no.

NO!!

No it’s not!

I’ll tell you why it makes me so mad.

It completely and totally minimizes all that MY special needs child has to go through to live in this world. My blind daughter who has to navigate around in the dark in a sighted world. My non-verbal child who has to try to be understood silently in a world full of language, subtle communication, and written words. My daughter has to survive and thrive in a world that doesn’t always understand or like people who are different. People who don’t have time for, or an understanding of, or compassion, or empathy, or a sense of humor, or many more things that are needed to understand, love, and appreciate a person with autism and other SPECIAL NEEDS.

It completely and totally minimizes all that WE have to go through as special needs parents. Her only special need is NOT just to be loved. It’s a whole hell of a lot more. All children need love. That one’s easy as a parent. I always love my kids. I may not like them very much sometimes (that’s a whole different post), but I ALWAYS love them.

She has specific special needs.

That’s why we call them special needs kids. Otherwise we would call them regular needs kids right? Or normal? No. Not normal. That’s a setting on the dryer. Vanilla? Plain? Average? Non special needs? Neuro typical? What? Kids. I have my kids. 3 of them. Or 3 children and one of them has special needs.

She has many more special needs other than just to be loved.

She has seizures, she takes a bunch of medicine, she doesn’t walk very well, she needs a walker at school, a walking wand, my hand. She’s not potty trained yet, she doesn’t talk, she can’t see, she has epic meltdowns, she doesn’t sleep well, she has stomach issues, she has to eat special food, she needs special therapies, special equipment, special people in her life who appreciate all that she CAN do and all that she is CAPABLE of doing in the future. She has enough doctors, teachers, specialists, therapists…ect., to populate a small country. Sometimes I feel like I am running my own country. I am a dictator here in Oliland.

This minimizes all of the people in her life who work so hard for her. If we just said “Oh. Her only special need is to be loved? Great. Job accomplished. Pass me an award. We did that in our first 5 minutes with her.”

It’s so much more than that!

It’s okay to acknowledge that our kids are different. That they need different ways to help them learn and live and love and grow to be amazing people.

And it REALLY pisses me off that they use the word only in front of the word special needs. Don’t even get me started on that one.

Only? Only!!

NO. Wrong.

You are NEVER allowed to use the word only and special need in the same sentence.

Never.
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This is autism.

3 Apr
This is why we need autism action. Autism awareness is nothing without action.

This is why we need autism action. Autism awareness is nothing without action.

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Why Do Our Children Do This To Us?

30 Mar

1. This: When you return home from grocery shopping and have your arms full of grocery bags, the onslaught of requests will begin. BEFORE your shoes are off and the bags are set down. “Can you get me juice? I need a snack. I’m STARVING! Can you wipe me? Here mommy. Take my booger.”

2. And This: When you wear a black shirt to hide the stains from sticky, nasty kid hand smears, someone will throw up on you. You just can’t hide that. No matter what color you’re wearing.

3. Never This: When you wear a white shirt. . . Lol! No sane stay at home mom with little kids ever wears white!

4. And This: You’ll find yourself arguing with a 3 year old about things like why she can’t put picked boogers back into her nose. “But mommy! You told me not to pick my nose! I’m not picking the boogers! I’m putting them back in!”

5. What About This: As soon as you drift off to sleep. . .finally. You will hear a little voice in your ear. “Mommy. Are you awake? I’m scared. Can I sleep with you?”

6. Yeah This: There is no sleeping WITH you. That would imply that both of you are sleeping. They are sleeping BESIDE you. With their feet in your face and their butt poked into your stomach.

7. Always This: You will wash their favorite sheets, get them put nicely on their bed, put them to sleep. . . and they will pee. They will pee the bed every. single. time. And then demand that you wash them again immediately. Because those are their favorite ones.

8. And This: You’re planning on going out somewhere. You make your kid go to the bathroom 5 minutes before you leave. And then you make them go again 1 minute before you leave. You arrive at the store or restaurant or park which is literally 3 minutes away from your house. As soon as they step out of the car, “Mom. I have to go potty! Now! It’s an emergency!” What? Didn’t we just do this? It doesn’t matter. You can try restricting liquids for hours before leaving the house. They won’t pee for DAYS at home. As soon as you are out in public. . .Whoosh! Open up the faucets. Let the pee fest begin.

9. Seriously! Wth? This: The phone. The PHONE!! Why must they torture us while we are on the phone? My children will ignore me for hours. “Go do your homework.” Nothin’. “Stop fighting with your sister.” Nothin’. “Clean your room.” Silence. The phone rings and suddenly I’m the most popular person ever. “Mommy. Oh mommy. I HAVE to tell you a story. Yesterday at school Johnny had a red pencil but really wanted a blue one so he was sad and did you know that one time when I was 4 it snowed and do you remember that you didn’t let me go out and play in it and I’m still really mad at you and I have to poop so I need you to stay right here because I may need help wiping and keep listening because I still have soooo much to tell you and. . . .” Aaggghhh!!!! Where are their mute buttons?

10. Finally This: When you’re sick they will do all of these horrible things plus a thousand more.

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Something That I Don’t Talk About

28 Mar

Aggghhh….Okay. This is the post that I didn’t really want to write. I didn’t want to write it because it makes me really sad. Which actually says a lot.

People have asked me to talk about what I felt like once I became pregnant again. What happened to make me decide to have another baby once I knew all that I knew about Oli.

I’ll start by telling you that it wasn’t an easy decision. Especially after we learned that Oli had a genetic deletion. It was something that could affect subsequent babies, although the likelihood was only 5%. 5% feels pretty huge once you already have an affected child. Any percentage above 0 feels like an enormously stupid roll of the genetic dice.

You want to know how I felt when I looked down at that little white stick and saw 2 pink lines appear?

I felt terrified. I felt scared and selfish and happy and overwhelmed.

I felt like I had probably just sentenced this tiny little miracle to a life of blindness. A life of doctors, therapies, and disabilities.

I didn’t have a whole lot of time to process learning that Oli’s condition was genetic. I found out about her OTX2 deletion and then found out I was pregnant just a few weeks later.

Many scenarios ran through my head once I knew that I was going to have another baby. One thought, which I really really HATE to talk about, was maybe I shouldn’t have her. Maybe I shouldn’t go through with this pregnancy.

I don’t like to talk about that thought because the idea of my Ginger not being a part of my life literally brings me to my knees with pain. It sends a stabbing knife of sorrow straight through my heart and makes it hard to breathe.

My baby girl. My little Ginger. I had seriously thought about not having her.

See no one really talks about this.

I was raised Catholic and abortion is something that you are never allowed to even mention let alone talk about. I never thought it would be something that I would ever consider. Because I never thought that I could do it. I always thought that if I got pregnant then I got pregnant and it was my responsibility to take care of that baby. Abortion was never an option.

Well…right at that moment…it became an option.

My views on abortion have always been more pro choice. Mostly because I don’t believe that I ever have a right to tell YOU how to live your life. That goes for my beliefs on everything. Religion, marriage, abortion… You name it. I don’t feel like I have a right to tell you what’s right for you. I’ve never lived your life, had your experiences, dealt with what you have. I never would feel comfortable telling you what to do. I don’t believe that anyone really should. Just because something may or may not be right for me does not mean that it may or may not be right for you.

So anyway…I struggled with what the right thing to do for me, my family, and my unborn baby might be. I did a lot of crying and a lot of praying and pleading that nothing was wrong with this baby. Eventually one night I was lying on the couch late at night. I remember lying there thinking, I have to make a decision before it’s too late. I tried to picture myself going into a doctor’s office and having the procedure. I tried to feel what it would be like to not know that anything was wrong, but choose to play it safe and not have the baby. How did it make me feel? Could I live with myself terminating a baby if I didn’t know that she was blind? What if she was blind? Was it really that bad? Even if she had other disabilities or something else happened, was it really better to never have been?

The answer I came up with that night was…no. No. I couldn’t do it. I couldn’t end a life based on the fact that it might be hard for her. I couldn’t not have her because it might be hard on me. It was going to be scary, but I just couldn’t terminate the pregnancy. I decided that it would be way worse to NOT give this child a chance at life, then to just have the baby born blind. I chose blindness as a possibility for this child over death.

I’ve never made a more significant decision in my life.

I went to the doctor and then called the Albert Einstein Medical Center to see if they could do genetic testing on the baby before she was born to find out if she was missing her OTX2 gene.

It was scary. I was scared the entire 9 months that I was pregnant. Even after the amniocentesis came back and said that she was fine…I was scared. Because what if something else was wrong? What if they missed something? They missed noticing that Oli’s eyes were small before she was born, what if they missed noticing something with this baby?

It was scary because I continued to wonder if I had made the right decision.

Another baby was going to take time away from Oli. She needed so much more time because of therapy and doctor appointments and she just needed more help with everything. It was going to take time away from Kekoa. He had already had so much of his time stolen away by Oli’s disability. Another baby was going to take more. And the baby. What about the baby? Would I have enough time and energy or even enough emotion left for this baby? Would this baby get enough of what she needed?

Was this the right thing to do?

Could I do it?

I had all of those questions throughout my pregnancy.

And then Ginger was born.

I laid my eyes on the most beautiful baby girl. This little baby looked at me with eyes that said “Just love me. I don’t need anything else. It doesn’t have to be perfect. Just love me.”

And I knew that I had made the right decision.

It was the right decision for me. I look back and think about what if things had been different? What if something had been wrong? Now I know that it wouldn’t have mattered.

It would have been a different road, but it wouldn’t have mattered. She would have been perfect anyway.

Because Oli is too.

Oli has taught me that life doesn’t always lead me down the nice, friendly, easy path. It’s not always sunny and clear. And that in my life I have received gifts that I never would have looked at as gifts. But that’s exactly what they are. If my last child had been born with a disability then she would have had a disability. She would have been different. And that’s okay. Different is just different. No more, no less.

I would have gotten through it.

Just like we all do when life hands us something that we are not expecting. We hate it, are angry with it and scream at it. We deny it and argue with it. And then we get through it.

And we move on.

Because really?

What else can you do?

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They wouldn’t let me adopt a puppy, but they gave me a baby?

24 Mar

This whole pregnancy, motherhood, taking a baby home, and child rearing situation in our society is whacked!!

Did you know that when I was in college I wanted to adopt a puppy?

Yep.

I lived in a little duplex with a few girls and I wanted to adopt a Boxer puppy from the local Boxer rescue society.

You know what they told me?

No.

Nope. No way in hell we are letting this young college girl, with no yard, a small house, who is not home all day long, adopt one of our cute, precious little puppies. No way lady!! Come back when you graduate, are more responsible, have 3,000 square feet of living space and at least a yard big enough for the dog to take a proper dump in.

They grilled me like they were from the FBI and I was on their Top 10 Most Likely Not To Take Proper Care Of A Puppy List. They wanted to make a home visit. I had to answer a bunch of questions. I thought they were going to ask me for a urine sample and then hook me up to a lie detector.

After I failed and they deemed me unworthy of caring for one of their dogs, I was kind of relieved. I mean, who can handle that kind of pressure? I was too scared and they intimidated me so much that I became convinced that I could not care for their puppy. Maybe there was so much more that goes into the proper raising of a good, respectable, descent, loving, nice puppy that I had not considered. Maybe I would mess it up and it would turn into a Beggin’ Strips addicted, too lazy to fetch, dumb, can’t even walk on a leash, toy stealing, co-dependent dog that I would be ashamed to take to the dog park.

People at the dog park would look at my dog and then think “Well that dogs owner clearly should never have had a dog. Look at him! Sniffing my dogs butt like that. He didn’t even ask if he could play with Fluffy’s ball! He just took it and ran away! Where is his owner? Oh, there she is. Of course. Young. She probably isn’t even home all day to train him properly. She probably just gives him treats when ever he wants and never taught him to sit. Look at her. On her phone, of course. She’s probably wasting time of facebook. She doesn’t care about him. What kind of people gave her a dog? Didn’t they do a background check? Did they even visit her home and make sure that she was capable of taking care of a dog? Obviously not. People like THAT just should not have dogs. Hmph…”

You know what they told me when I gave birth to a baby?

Okay! Time to take him home!

What? Don’t you need to check my pee? Make sure that I’m not hopped up on crack? Where’s the lie detector? I didn’t really weigh what I told you I weighed before I got pregnant. I lied. If I lied about that maybe I lied about more. What if I don’t have a big enough house for a baby? You should know that I don’t have a yard. Nope. No yard. Apartment liver here. Isn’t there some sort of rule that you can’t live in an apartment if you have a baby? Don’t you need to make a home visit? Make sure that I baby proofed it correctly. My husband put together most of the baby furniture, but I did try to help him and put some together myself. You may need to come check it out. I’m not so good with directions. It’s entirely possible that the whole crib will just come crashing down one day. Don’t you want to know what brand of baby formula I intend to feed him? What if I choose a cheap, off brand? Surely you wouldn’t let me take him home if I just choose any old formula and didn’t research it. What about clothes? He’s a boy. What if I choose to dress him like a girl because I’m weird? How do you know I won’t make him wear outfits full of teddy bears and give him a complex later? What if I choose to put a blanket over him at night? What if I let him sleep on his tummy? What if I put him in a Bumbo seat on the table and then leave to go to the bathroom? What if I have no money in savings? What if I never even thought about where the money for his college will come from?

No one is interested in learning these things before you let me take him home? What if I mess him up so badly that if I do end up saving enough money for college he has to spend all of it on therapy?

The ONLY thing I had to have to take my son out of that hospital was an outfit and a car seat. And the outfit was optional.

No one asked me ANY questions. I begged the lactation consultant to come to my house to make sure that I was doing it right. I called my mom hundreds of times in tears certain that I was doing it wrong. I called my husband even more in tears because my baby was nothing like the babies that I had taken care of in the NICU. He did NOT sleep for 3 hours and then wake to be fed. He wanted to eat every 1-2 hours which totally threw me for a loop. He was not supposed to eat that often. Didn’t he know the schedule? We were on a schedule here! He wasn’t supposed to want to nurse for 45 minutes. 30 minutes was the maximum he was allowed. That was how long his lunch break was. He quickly informed me that he did not agree with this allotment of time. Our whole first month was me trying to set rules and schedules and him crying and breaking every rule. He never followed my schedule.

He cried, I cried, and my husband laughed.

“Relax. Relax. He’s going to be fine. You need to just calm down.”

“Don’t tell me to calm down. Don’t tell me to relax. You don’t understand. Just because you’ve had a baby before doesn’t make you the expert.” I was ready to rip his head off when he mentioned my step daughter’s name.

Didn’t he understand what a big deal this was? Didn’t he know that in the past I was unqualified to care for a puppy? I never told him about that. I was afraid that he wouldn’t want to have babies with me. “Well, I can’t have babies with HER. They wouldn’t even give her a puppy She would mess our kid up FOR SURE!”

Yep.

Our society is whacked.

NO PUPPIES FOR YOU!

But we are handing babies out to every neurotic, crazy, young, under qualified, terrified new mother on the block.

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Why I Feel The Luck Of The Irish Today

17 Mar

In the spirit of St. Patrick’s day, Irishmen, luck, and all that, I thought I’d write a few reasons why I think I’m so lucky to be a special needs parent. Now, before you throw up a little from my extreme sappiness and begin thinking that I am THAT mom (you know, the one who tells you everything in life is great, chocolate and strawberry milkshakes, cotton candy, and unicorns). Just know that I didn’t always feel this way. If you’ve read most of my blog you already know this about me. (And if you haven’t read it, please do. If you want to. I’m saying that in my mom tone.) And also know that I don’t feel lucky every single day. Some days are really rough, but who doesn’t have those days? Special needs child or not. My rough days might just involve more Q-Tips, poop, and dinners gone wrong. I just try to remember to be grateful every day because if I forget that…it’s a very dangerous place for me to be in (Eventually I’ll get to that part in my story. Stay tuned. It’s a good story!)

I felt soooo sorry for myself for such a looooong time.

Why did this happen to me? I didn’t ask for this. I didn’t expect to have to have this kind of responsibility in my life. I didn’t want to drag my child to hundreds of doctor appointments, therapy appointments, put her through surgeries, conformer appointments, evaluations, and watch people as they judge her, make fun of her, or feel sorry for her. I also didn’t want people to judge me, question the decisions I made for her, or feel sorry for me.I didn’t want to have to watch my child struggle. I didn’t want to constantly wonder what she was thinking. Wonder if she was really happy. Wonder what she wanted and what her dreams were. I never wanted to feel like no matter what I did, that it wasn’t enough because I just couldn’t fix it for her. I couldn’t make people understand her or love her or treat her with compassion. I couldn’t stop the stares or the questions. And I couldn’t really know how much of it she understood.

I didn’t ask for any of it.

But, you know what?

Neither did Oli.

Neither did she.

So, eventually I got my head out of my ass and stopped being the person that I hated. The one who felt sorry for her and felt sorry for me.

Which now brings me to the reasons that I feel lucky to be her mom. After that very long winded introduction.

1. First off, I feel lucky to be anybodies mom. Seriously. To be in charge of little people who are so interesting and funny, strange and bizarre, naughty and annoying, but who are ALWAYS loving and amazing. It’s so crazy and I cannot believe that it is possible to love anyone as much as I love my children.

2. The people that I have met because of Oli are some of the most influential people in my life. Other moms who share their journey with me and continue to awe and inspire me every single day. They are some of the most courageous, generous, selfless, positive people that I have ever met. Therapists, doctors, outreach coordinators, teachers, parent support coordinators, ocularists….the list goes on. I’m so lucky to have these people in my life. Without any of them, I couldn’t do any of what I do. I need support and sometimes I just need someone to listen. Because of Oli I have all of that.

3. I feel lucky that because of Oli I have something to write about. Bad reason, I know. But, it’s true. Because of her I get to tell our story. I get to reach out and maybe let someone else, whose been where I’ve been, know that it’s okay. They’re not alone. It’s really crappy at first. And it’s hard and it’s sad, but it gets better. It gets so much better. Even if it gets harder because our kids get older, it still gets better.

4. On that note, I feel lucky that I get to share my story with so many people who don’t have a special needs child. Because maybe they’ll read my story and gain a little bit of understanding and perspective. Maybe they’ll read my story and the next time they see a child in public who looks a little different or who is having a meltdown, flapping, shaking, humming or yelling, they’ll think of my Oli. And then they’ll remember what I have said about my journey. How hard it really is sometimes and that all we want is a little bit of compassion. Maybe they will try not to look at the parents with pity or not judge them because they can’t control their kids. Maybe I’ve reached someone out there and it will make a difference in someone else’s life.

5. Most of all I feel lucky to be her mom because…well, because she is just my Oli. If you’ve met her you know what I mean. She feels everything with a fierce emotion that is so rare. I’m glad to be a part of that. I get to see her face challenges head on and never back down. Rarely does she show fear. She trusts me so much that sometimes it scares me. She loves me so much that sometimes it takes my breath away. And she is so brave, strong, funny, curious, and stubborn that sometimes I just look at her in amazement. How can such a big, sweet, phenomenal personality fit into such a tiny little girl. She reminds me every single day what my purpose is in life and allows me to share this bumpy road with her. She forgives me when I mess up, she forgives me when I have to do something unpleasant to her, she forgives me when I allow doctors to do things that are unpleasant, she ALWAYS forgives me. She always just continues to love me. She might be mad for a little while, but then she will wrap her little arms around my neck, pat me on the back, and whisper “Mom-Mom” in my ear. It’s like she’s saying, “I know it’s not your fault Mommy. I know you didn’t ask for this either. I know that you are just trying to do what’s right and are doing what you think is best for me. I love you and I love that you walk BESIDE me and not IN FRONT of me. And I’m really glad that you don’t feel sorry for us anymore.”

And those are the reasons that I’m so lucky to be Oli’s mom.

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I Suck At Being Pregnant

10 Mar

My baby, Ginger turned 3 years old yesterday. 3!! I can’t believe she’s not like 20 by now! It’s almost hard to believe there was a time in my life that I didn’t want one more baby.

The day after we found out that Oli was blind, I turned to my husband and said “Well that’s all folks! We have hit our limit! Time to turn in our baby making equipment.”

It’s hard to remember a time when Ginger wasn’t just hanging around the house, laughing, singing, and trying to be the center of attention.

When your baby turns 3 I hear that a lot of people get asked “Are you having any more?” I only hear these things because I have NEVER been asked that question. Rather, my family pleads, “Please. For the love of God. Pleeeeaaaase don’t have any more!”

You think it’s because I have Oli right?

Nope.

It’s because I suck at being pregnant.

I mean I TOTALLY suck at it!!

I’m uncomfortable and sick and my back hurts and I’m grouchy and then I’m happy and I cry a lot and I’m tired and I’m paranoid and then it starts to feel like things are going to just fall right out of my girl parts and then I just start bitching at everyone.

Every once in a while (like maybe once every pregnancy) I love it. When the baby kicks I think “Wow! This is the coolest thing ever!” But, then I get kicked in the ribs or down in the no-no region and it feels like a foot is going to poke through down there and then I’m back to “Nope. This is horrible.”

I know that there are going to be some moms that read this and think “Well, I just don’t understand what she is talking about. I love being pregnant.When I’m pregnant I feel like I’m floating on air and riding on a unicorn surrounded by butterflies. I don’t even mind being sick and when I throw up I think that it’s amazing because it’s like I’m throwing up a little bit of heaven wrapped in nature’s love.”

Blahhhh….

Those moms might want to stop reading this post at this time because I’m about to bitch about it a whole lot more.

And then…then… you’re expected to give birth to them. Like being pregnant wasn’t torture enough, then you have to get them out of your body.

Oh. My. God.

It’s like something from a gruesome horror, alien, science fiction movie.

I had my 3 babies naturally. And by “natural” I do not in any way, shape, or form, mean that I had them drug-free. Oh HELL NO!! That’s just crazy talk. However, there did not seem to be enough drugs in the world for me not to feel completely mortified each and every time.

I mean that my doctor forced me to have them come out of my…you know where. (I hear that a C-section sucks even more so I’m glad that I didn’t have to do that.)

Before I had my first baby I was hoping that there was a way that I could get my doctor to just knock me out completely, do whatever he had to do to get the baby out without my knowing how he did it, and then just wake me up with a beautiful little baby in my arms.

Apparently they no longer birth babies this way and my doctor was in no mood for accepting my sobbing pleas or my attempts at bribery.

Soooo….I found myself at 38 weeks pregnant with my first child, lying on a hard table with wings attached to it, my legs propped up in the wings, exposing my nether regions to the entire audience, with a big Ziploc baggie thing under my bum, staring terrified at my doctor who was wearing a pair of safety goggles, SAFETY GOGGLES!, and a big hazmat looking plastic mask.

OH MY GOD!

Just WHAT is about to happen?

I vowed right then that I was NEVER going to do this again.

But, I became a mom moments later so my forgettery kicked in. 17 months later I found myself in the exact same position thinking the exact same thing.

I’m never doing this again. How did I forget this part? This is awful!

It’s a good thing that childbirth comes with a quick forgetter when it comes to that part.

Otherwise my son would be an only child and I would be missing the other 2 absolute best, most wonderful parts of my life.

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